INVISIBLE DISABILITIES: PARENTING THE NEURODIVERSE IS LIKE GHOST HUNTING

​     When your kid is extraordinary it’s often not something you can see, it’s more of an invisible difference. If a child has a disability like being deaf or blind, the difference can be seen in the way he or she moves, talks, or interacts. However, if your child has been diagnosed Neurodiverse; ADHD, HFA (high functioning autism/Asperger’s), Gifted or with Learning Disabilities like Dyslexia or Dysgraphia, then it’s most likely something you cannot see.

      
      These kids may appear shy, quirky, show some OCD’s, talk out of turn (or not talk at all), and to the average person these quirks may appear to be learned behaviors. As the parents of these kids, we know they are not learned behaviors, but parts of the whole that make our kids extraordinary.
      Our lives as parents are different, not just in the way we educate our kids, but in the way we do most things. Adding to our experience is the way we are judged based on what people see. People see the behaviors, but  they don’t see the stories, the drama, the tears, or the struggle behind those behaviors.
         Just to give you an idea of the difference, here’s an example of taking a 10 year old kid to the park.
      For most parents, this is a simple task. Dress your kid in the appropriate clothes for the current weather, maybe invite a friend or bring a sibling. Get to the park, play, keep an eye on the kid to protect them from getting hurt or approached by strange adults. Go home, clean up, and get on with your day.
          For the parents of extraordinary kids, there’s more complexity to the  steps.
         First you have to get your kid with sensory processing disorder (which makes them super sensitive to the feel of things touching their body) dressed. Your choices will be limited. For example, there are only two pairs of pants he will wear (both are shorts), and 3 shirts which have to be loose fitting, no tags, right color, and of a specific fabric, and socks, but he won’t wear them because of the seams, even though you got the seamless kind, and shoes, but it has to be Crocs, even though it’s 40 degrees and windy and there are woodchips in that park. So you’ve got him wearing a t-shirt, but no jacket…  it’s too hot, scratchy, and tight, shorts, but they are dirty because he only has two pairs that he will wear, and you have to do laundry every other day, so dirty works for now, and an old pair of worn out Crocs for which there will be emotions because of the woodchips in his shoes,  and it will most likely be a full on meltdown with kicking and screaming  because he cannot explain what’s bothering him, and his high emotions won’t let him access that part of the brain that helps him think these things through, but that will happen later at the park, right now we are just working on getting dressed.
          Finally, he is dressed and it’s time to get in the car. The back-passenger window has to be opened 1 inch or he “can’t breathe”, and the heat is too hot so don’t turn it on. The seat belt is “cutting” him “in half”, but it’s the law, so go ahead and scream all the way to the park kid. Earlier you offered to bring the only friend he has that will still play with him, but your kid refuses because… oh, he can’t explain that either because of his limited social emotional language issues, but you just tripped a trigger, so hold tight, this can implode at any moment.
        Now you’re on the playground. There are a few peers there, but they don’t acknowledge your kid. Or maybe one does, but your kid, feeling overwhelmed and unsure what to do, seems to ignore the peer that attempts to say “Hi”, and goes directly over to a swing without looking back. He begins to swing rhythmically, asking you to push even though he is well beyond the age of needing a push. Other parents are beginning to look. The swinging goes on forever, okay, maybe just 5 minutes, but you are tired of pushing, so you stop. He yells that he wants you to push more. You say “Okay, two more minutes.” When the two minutes are up you stop. This starts a (disrespectful sounding) debate about time and how long two minutes is.
         Other parents are definitely looking now.
         Your kid is definitely getting dysregulated (meaning an impending meltdown is headed your way), so you relent and let him swing a little longer because you know the swinging helps to regulate him.
But, now parents are outright staring at you! You can feel them thinking “Why do you cave in to your child?” After what seems like an eternity pushing a swing he is finally ready to move on, but, as we predicted, he has woodchips in his shoes. He is feeling overwhelmed by the sensation and kicks his shoes off and they go flying in opposite directions as he runs to the other end of the park and you  run off to retrieve the shoes.
          Having a clue that it might be the woodchips bothering him, you don’t scold him (that would make things worse). You just gently let him know that he can ” take the shoes off without throwing them”. As you turn toward the first shoe, you hear him grumble “Jerk” from behind you.  He just called you a name in plain sight of everyone because his frustration tolerance along with poor emotional management has him overwhelmed and lashing out. You know you will have to address that later when he is calm.
            Can the people in the park see why he said it, and why you responded the way you did?
            No, of course not.
       It’s now time to leave the park. You gave the appropriate time warnings, set the expectations before you left, but he is not ready to stop what he is doing and move on to the next thing. Transitions are hard. So, he throws himself on the ground and just lays there covering his head with his t-shirt and refusing to move or talk. At first you try coaxing, then you try convincing.
People are staring.
         Finally, exhausted and worn out, you offer ice cream. After a few minutes, maybe he relents, or worse, you carry a kicking and screaming anxious 10 year old to your car and try to wrestle him into the car seat hoping no one calls the police about a possible abduction. Either way, you strap yourself into your car in a fog of anxiety and shame.
           YOU ARE DEFINITELY BEING JUDGED NOW! 
       You are in the car, on the way home you are asking yourself what you did wrong, what could you have done better, or on a particularly bad day, you may ask what is wrong with your kid? In the quiet of the car, he gets himself re-regulated by watching a video on the tablet, and you are just grateful the parents aren’t seeing that as well. 
​          You go home feeling like a failure and completely drained just from taking a short trip to the park.          When you get home you make an attempt to wash his dirty hands and face which sends him in to a screaming fit and running through the house all because it’s just too much stimulation after the park. The neighbors probably think you are beating the poor kid. This is not an unusual day, this is typical, but your day isn’t over, and the challenges ahead won’t be seen by those who were watching the show at the park.
        Yes, parents were watching and judging big time. Probably thinking “What a brat!” Or worse, “I would never let my child…” and you know it.
           Maybe you even judged someone like that before you had this kid?
In the end, you have to tell yourself they cannot see what is actually happening with you or your child.
          You must talk yourself through this, and it takes a lot of emotional energy.
          Even though you know they cannot see it for what it is, it’s not very comforting.
          Frankly we can’t always see it either.
          Not all the time, and definitely not in the beginning.

​      I admit, as the parent of one of these kids, I have made demands, set boundaries, and created expectations, unknowingly setting my child up for a meltdown, shutdown, or worse, a breakdown, because I simply could not see why they couldn’t just do what was expected.
       To make things worse, I would often succumb to the pressure of the observant parent, friend, relative or therapist who told me all the things I was doing wrong. I would set out to become more strict, set more boundaries, expectations and punishments, only to find I was moving backwards and blaming myself while I felt like my life was spiraling out of control, and my child was sinking deeper in to anxiety (fight, flight or freeze) out of frustration.
        It took a long time for me to understand what my child was experiencing. First, I had to separate myself, my issues, my expectations, the ignorance of others (including professionals) and my fear of being judged from my child, and the behavior. Learn more about Neurodiverse Behavior    Challenges here.
          That was a huge task.
        Then, I had to try to see the invisible. I had to find the ghost in the dark with all the pieces that made up my child, and put them together to make sense of what I could not see, touch or understand.
I had to go on a hunt for what my eyes could not detect. I had to become a ghost hunter.
         Parenting extraordinary kids with invisible “disabilities” is a lot like ghost hunting. Unsure of what you are looking for or of it’s existence.  People tell you it’s there, but you can’t tell myth from reality or feelings from facts. To make it all more complicated, some people refuse to believe there’s anything there (denial).
           So, people will judge. Some may even think that because they cannot see it, it doesn’t exist.
           Some may judge you only because they are ignorant, unknowledgeable or just plain self-absorbed.
          It really doesn’t matter; “The main thing is to keep the main thing, the main thing”.
                                                                                      You are the parent.
                                                                                      You love your child.
                                                                                    You work hard at this.
                                                                                   You know it’s not easy.
                                                                                          You will be tired.
                                                                                   You will bend or break.  
​                                                                                            You will do this.  
         People will judge you for ghost hunting, but you must know this:
​         This life we live is real, our love is big and…

​                                                                      WE AIN’T AFRAID OF NO GHOST!


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